As you could see from my first post of 2015 (excuse me, but I had kind of fallen down on updates here) ... things that I truly wanted to go well, that I wanted to do more, be more, especially with my advocacy, activism, and Ambassador
We can rely on life to be ever changing, ever moving, sometimes running, other times crawling as we decide what "we" want to do in our life. Whether it be for a day, an hour, a month, a year, or even a lifetime, "life" as we know it, always takes us in a new direction. We may feel it is not the absolute right direction at the time, yet I do believe "everything happens for a reason".
I've never thought that in a major way we honestly controlled our own fate. Now we sure "add" or take away from that even sailing course, yet, talking in an absolutely ironic manner, just when we have in our minds and hearts, that things are going well, you can place a bet on... the fact that something will change. It may not be in a year, month of Sundays, or when you "think" it should, but there is this inevitable driving force in our bodies, hearts and minds; moreover in our souls, that really we are put here to do something in a certain manner. We have the ability to "take our goals" and change them. We have somewhat of a "free will". Honestly, I truly believe in some ways, we can "write our own ticket"... whether that be fame and fortune, digging a ditch, becoming a "career criminal", or wherever our little minds decide to do the walking, we are apt to either want to whine about it, change it, or like most "kids" throw a temper tantrums... all shall be as it should be. Many times we are not totally appreciative of where that leads us.
So, when 2015 rolled in with a New Outlook, new plans, new reason, new goals and how I was going to make this "my year" to shine. I am to complete the book I'm writing. I had chosen to "back down" a bit on some of my other activist work; at least until I get the book in its "published state". Then I can always pick back up after I have it done, gone over, ready for publication, and out the door to its entire published state. That is STILL my goal. At the very beginning of the year, of course things began to change. I was not well, had double pneumonia, lots of paperwork to wade through for Mom, then we still have all types of things with the accident from a year ago April to deal with. My health has not been the best. I continue to deal with the flares, and now quite a bit of pain, that of all things hits me when I sit too long at the computer, then it decides to give me grief. Yet, I get up and go to the store and stand on my feet too long, and that also makes my lower back and hips hurt like hell. I have already been down the route of a CT Scan. Which does show some issues, yet as usual, what it shows should really not be causing me the severe pain that comes on.
I shall finish this in the next couple of days - Rhia 5/19/2015
Writer and poet at heart. Firm beliefs in advocacy of several issues, including Domestic Violence, Chronic Pain and Autoimmune Arthritis Illnesses, some things in politics that have to do with getting the medical help people with these illnesses so desperately need, Love web designing and designing graphics, lover of people, life and music. Lupus Survivor, Published Author, Writer, Poet, "Voice" for others with Autoimmune Arthritis Illnesses, NomineeActivist for WEGO Health, blogging for Advocacy for Autoimmune Arthritis, Blogger for IFAA, Active Volunteer for IFAA. My dream now is to able to help advocate a new Autoimmune Arthritis Group here in my community along with give donations to help with new research, possible new medications, and give information to those who are battling Lupus, Rheumatoid Arthritis & other autoimmune diseases. With the whole host of hundreds of Autoimmune Illnesses goes also the many number of "overlapping" health issues caused from having autoimmune issues. From Chronic Pain, hart problems, kidney issues, lung, brain, and neurological problems, the array of related illnesses grow each day. Recently I have decided to become an Active Volunteer for the International Foundation of Autoimmune Arthritis. I feel the initial Founder has really given me new reasons to live up to what I feel I need to do with my life. Tiffany Westrich-Robertson is just a wonderment and testament to you can do anything, even when you are chronically ill.
My plans are still to publish a 3rd book. I have wanted to "tell my own personal story" of the journey life has taken me for a long time. Actually much of the book itself is already written. From my daily blog postings, Facebook postings, and elsewhere that I tell my own tales of autoimmune illness, I have the "information". I just need to be able to "stop" long enough to organize it for everyone else, so it will make sense!
My dream from 14 was to be a published writer, and even though that took 50 years, I became a published author of TWO books, in 2012/2013!
I've dedicated them to the "fight" against Autoimmune Arthritic/Systemic Illnesses, and all proceeds will be given to one of the several Foundations that are serving those like myself with new research, more education for doctors, other health care workers, patients, and caretakers. There is much work to do in regard to the "life altering", and even life "shattering" illnesses, that know NO boundaries. It matters NOT age, race, religion, notoriety, gender (although for the most part women seem to be riddled with these much more often than men), or how much money you have or don't have.
As often I have the "mask" of the Lupus (which means Wolf) , I find these illnesses just as the "wolf" knocking on your door, and taking the very quality of living you had away within days at times.
Your ENTIRE life is altered. You must "learn" to deal with this whole new way to live. Plans change, family sometimes just either draws closer, or sometimes family and friends suddenly disappear. Things such as going to the market, vacuuming your carpets, cleaning your car, HEY EVEN just GETTING OUT OF BED can change within days! So, I do ALL of these things to HELP YOU, and also give myself a place/places that I can truly reach out and help others, which has ALWAYS been a priority for me.
My hopes are that I can continue to do these things, my blog, my advocacy work, my activism, write my 3rd book, so I can share with others, and hope that you take a few good things for you from them. If I can "touch" one person in life, through these avenues, then my "job" on this Earth is done!
I am going to try and catch you up about me. I never got a real chance after making all of the "new" pages to begin writing in them. As you already know of course I had two books published.
Much has happened in "my life" and in many of your lives also. Between our chronic illnesses, chronic pain, medications, doctors, tests, flares, surgeries and gosh that is to just to name a few... that is just our personal struggles.
Then when we "add in" the "nations issues and our entire WORLDS issues, the thought of turning on the news almost frightens me. At least in the past our news had "good" mixed in with the horrors of life around us. Now we must watch over our shoulders in a mall, at a market, driving down the street, your kids in school... to even going to church all are things we now take a 2nd look at wondering whether a huge city or a small rural town, we are concerned.
Each night I pray for healing for all of the illness we have among us, for more faith since mine seems to be getting lesser as the days go by, and the peace, peace peace, for every country on this Earth. Yet, there are people out there, whether humungous city, or a tiny community that want to harm us. And for the most part people living their lives in especially a small town, never really stop and think
"that could arrive here to harm us." We go on about our lives, as if none of that matters. Yet, anytime some person or person's could be awaiting the exact time to "POUNCE" on the unsuspecting at any given moment. I find myself even playing out scenario's of how "the monsters" or whatever you want to call those full of hate for others in their hearts, I think about they might poison our water with chemicals, or throw, or throw a "dirty" bomb in a large place of people... I mean each of us have to have some thoughts wondering what will come next.
Chronic illnesses, Chronic Pain, Autoimmune Illnesses and all of the illnesses bring with them, continue to grow in our population. Now I understand of course we have MORE people, MORE people living much longer, and we have many more ways to get to see a physician, and specialized physicians that can either cure diseases such as these, or at least keep them at bay with medications and treatments.
My entire attitude has truly changed about how I look at the autoimmune issues of myself and of others. I would never in a million years thought at the age of about 38 years old, I would showing terrible "ear and tear, physically or emotionally ran over by the illnesses. At that time I could stil go dancing, go to the shopping mall, and walk all day long around some events if I chose. I could work full time, go to college with almost full credits, do all the "homework" that went along with that work and school. I did all of the shopping, most of the cooking, cleaning and laundry. I did most of the shopping for school supplies, shopping for clothes, and still keep going like the Ever Ready Bunny! You could not have back at 38 told me I would lose ALL of my teeth and have dentures... no way, no how... I swore on that one, and another but thank God the other has not happened. I pray each day that is doesn't.
Never even as I was a healthy, active, do the yard work, fix the water heater and put up ceiling fan by myself. Of course at 38 I never would have had moved to California, Seattle and back to Texas, after two heart attacks. I knew about "Lupus" from hearing it from someone that knew someone that had it. Even back not that long ago although Lupus, at the time was almost like a "death sentence". They had no cure'; and in fact they really did not know much about the disease at all. Yet, it was very evident to all who had heard about it, had it, were diagnosed with it.... it meant a "chronic" illness that would be with you the rest of your life. At the time I recall hearing something about the "mask" of the wolf. It was a rash that covered your nose and cheeks, thus the term "Lupus" fit due to it appearing almost like the way a wolf's face does.
For years, many years back then I was fighting and had been fighting horrible migraines. yet, another "illness" that little was known about them and they were experimenting with all kinds of medications to see if something would "stick" per së "Well, I was just plagued with something that at first, a "man" doctor, usually wanted to know you off, and say it is just hormones, or some kind of something they blamed the "female patient" for. Like we caused it. I just about fainted to hear physicians say those kinds of things to "women". You can bet if I man walked in with a severe migraine he would try is best to help him get rid of the pain and nausea.
It happens that "CFS" Chronic Fatigue Syndrome, FM Fibromyalgia... it will all in your head.. no way anything like that existed!
October 18th, 2014
It is amazing how quickly the year has flown by. I thought it would be one of those long years, that would seem endless in it's changing over to another year. I cannot fathom it is already mid-October, and before long it will be holiday time with all of the drama, stress, family, baking, worrying over what to buy, how to not spend a fortune, yet make everyone happy in the meantime. When you are "chronically" ill, it changes the way you look at daily living. You don't seem to overly stress the "little" things, but it takes awhile to learn HOW NOT TO STRESS over them. I recall not to many years back, the holidays meant my entire house decorated and drenched in its own "Christmas Attire". I had holiday items for every room in the house, and there were several years the kids even had their own tree in their bedrooms. From the bathrooms to the kitchen, from the living area, to the outside, everything had it something for the holiday in it. Chili pepper lights in the kitchen, holiday finger towels in the bathroom, lights ran through & I spent quite a bit of time putting our my train around the tree, the lit up Christmas Village, and my manger scene. When Christmas Day came and then was gone, there I was once again taking down all of what had adorned our home for weeks and weeks, to pack away for the next coming holiday.
But, as kids grow and leave home, as you age, and then suddenly find yourself not well enough to climb ladders or even on chairs to put up lights and decorations, or even well enough really to get into the attic to bring down the tree, things begin to take a new form in the realms of decor. I have been doing away with many of my trinkets, silver that has to be kept polished, glassware that gets dusty and has to be washed, and other beautiful items, that used to be no trouble at all to clean and be out for everyone to see. Yet, when you begin to be fatigued many days, and don't really even feel like walking across the lawn, or cooking dinner seems like a great deal of trouble, then things that all too often get grimy, dusty, need cleaning, and not a soul sees them but you and your dogs you start to understand why you see other things that are much more important in life that spending days wiping, washing, dusting, and putting effort into such trivial pieces that truly don't bring you much joy, not as they used to.
Now, don't get me wrong, I still have many items out in my office, in our living area and around the house - much of my DIY items that I decorate the house with. But you tend to pick and choose wisely the items you truly treasure, you box up the rest, either giving them to goodwill, trashing some and hopefully others can be taken to be recycled. I've also became very "frugal" in my decorating... simple ideas with a few items from around the house, can turn into a wonderful items to be able to use over and over again through out each season, with just changing a few things on it.
I also have found that I WANT to spend more of my time on my advocacy work, activist work, volunteering and my ambassador types of items I participate in. They are so many things I've truly enjoyed through my advocacy work, even getting to go to Washington D.C. this past March, and hopeful the Lord willing and the creek don't rise as the saying goes... more like things are all lined up, I am well enough, no one else is sick, then I will be able to attend the the March 2015 Arthritis Summit on the Hill! I sure have my heart set on it. So, I am hoping things go well over the next months so I do have that chance once again.
Plus, I want to get that "voice" of mine back, where I can FINALLY write the BOOK I've been wanting to write now for almost 2 years... well honestly longer, but the two poetry books, I guess kind of made that one dream come true to be a "published author". Yet the ultimate goal is be to able to tell my story, allow others to "feel" my journey as I have taken it over these 50 some odd years. Not all of those have been through chronic illness and pain. But at least half of them, in one way or the other, I was ill, or I was having a surgery, or something dramatic stood in the way of my bringing all of what I want to say to others about myself. This is to be something to "inspire" people that they too can stand up for their rights. They can have a voice and use it. You can do some incredibly wonderful things to help volunteer work and never leave your home. So much can be accomplished online now. Which is just a life saver for those that can't travel, or don't have the means to travel, but use your mind, your heart, your fingers, and open up your soul.... and allow what lies within you to come out and find your own place in the realms of volunteering.
I had always thought after being a "Candystriper" for about 4 years when I was in my teens, that I would some day become a "Pink Lady" here at our local hospital which they do all kinds of things in volunteering. From running the little shop there, to bringing magazines to patients and so forth, they are always smiling and have such a wonderful presence when you are at the hospital.
But, much to my surprise I have not made it to be out there yet. With all of my issues between Lupus and RA... and never knowing when I may wake up ill one day to the next, it is difficult to volunteer for something out of the home, they depend upon you to keep that time to be there, plus you are also with autoimmune issues, more susceptible to other illnesses that you may come in contact with.
So, you also must choose your volunteer work. Believe me there are all kinds of places around even my smaller community that love to have people volunteer for doing something. They are appreciated for the help they provide out of the kindness their hearts, and not asking for a dime in return. But, the rewards I've received over and over again, from just one comment, or a kind word.
I am not sure if I will ever "complete" "the book" of my dreams. I did fulfill two of my dreams, one of course was the publishing of my two poetry books, and the 2nd was to be on Capitol Hill and address just how badly we are in need of more research, more medications, more funding, more education on autoimmune illnesses. I know this is a cliche' when I say it, but if we can even think about fly men to Mars to live out their lives there and survive, grow crops and so forth, then most assuredly we should be able to provide enough funding, education, financial support, medical research, and bring global awareness and provide a slow down of these diseases, and possibly not just a cure but a way to "avoid" them all together, like a vaccination against them. We desperately need to find out why so many people "immune systems" all of a sudden go haywire and begin to fight its own self, the body attacking its own cells, and bringing the immunity against the fight of infections, and everything else almost to a halt. I of course just as many of us have, had my own thoughts, reasons why, what, when, how, and so forth, when it comes to the reasoning behind why I suddenly became ill with not just ONE but SEVERAL of these illnesses. Another thing is just how quickly when it was finally figured out what was wrong, I began to become very ill with the symptoms and it took somewhere in the market of about 8 years or possibly longer before anyone could put all of the "numbers of 2 plus 2 plus 2 together, and come up with 6, in other words why did it take so longer to get it right. Then even after 18 tubes of blood work was done, still even the 1st Rheumatologist, who happens to have been someone who knew immediately upon a couple of simple X-rays of my hands and wrists, and of my feet and toes, along with all of the hypermobility of my joints, my dry mouth, skin and eyes, the coldness of my feet and hands, and his diagnosis what one of the two MCTD or UCTD... Mixed Connective Tissue Disorder or Undifferentiaded Connective Tissue Disorder. Well, a couple of visits down the line, more blood work, and medications, and we came to the conclusions of Lupus, RA, Sjogren's, Raynaud's.... some possible other mixed in there, thus even though he was a great Rheumatologist, he was NOT an aggressive type of Rheumatologist that would begin trying some of the newer medications - such as the biologic meds who had at that time recently came up on the scene. MORE TO COME!!!!
January 2nd 2015....and I go forward .....
Close to the end of 2014, I got an email that not only had I became an "Ambassador" for the Arthritis Foundation - I had also made "Platinum Ambassador" also. This of course was such an honor and thrill for me. I had so many different things going on in so many different directions most of 2014, from my own issues with Health problems, Migraines, Lupus, Mouth Ulcers, ill with double pneumonia, and had fought a flare for most of the year. In March on the 26th, 2014, as I sat waiting for my "Mother in Law" that I had not yet met after being with Jim for 10 years, was coming to pick me up from the Capitol Hilton Hotel. I was honored to get to go with a travel grant from the Arthritis Foundation to Capitol Hill where they put on the Annual "Summit on the Hill". For me, it was an exciting and kind of frightening trip. I have not flown that much during my life. I had never been to D.C. although had wanted to for years. I also was very new to the Arthritis Foundation as far as just beginning my year long study to be an Ambassador, so all of it was most exciting for me. That Wednesday we had ended our 3 day journey around Capitol Hill, and I had an incredible time meeting Rep. Joe Barton and his Legislative Assistant, along with meeting several other members of Congress, and many of their assistants that I got to know further throughout the year via emails and so forth. It became clear to me that being a huge activist, advocate and now Ambassador was very important to me, and to my life, and it is where I felt I needed to be. That fate filled day though more than what I ever thought might happen did... Jim, my husband back in Dallas, driving to the airport to fly out and meet me later that evening, and we were to spend a few days with his Mom, and site seeing... I got that phone call no one wants to get.. there had been a very horrible accident, and Jim took the brunt full force of an 18 wheel tractor trailer from behind on the main Interstate (I-45) as he came into the outskirts of Dallas. I believe out of all phone calls I've had in my life, that one took my breath literally away, and I honestly collapsed on the floor at the lobby of the Capitol Hilton. If it had not been for Chris Nieto, Laura Keivel from the AF, and several others there, I don't think I would have made it back to Dallas as quickly as I did. So, the majority of 2014 was a night mare in the making. We went through so many up's, down's, bad times, good times, highs and lows, tears and laughter... and at times more often that I ever would admit, total confusion as to what might happen in the next days, months and even years to come. We already had my own severe health issues, and then to add into that mix, Jim, parapeligic, not able to even care a whole lot for himself, much less be my caretaker as he had been for most of our time together============= - FINISHING LATER... 1/2/2015----
A NEW START FOR A NEW YEAR 2015!!! Learn a New Word Each Day and post it.
My two words for Yesterday and Today - along with their meaning and a "thought" for today!
Anthropocene - The geological period marked by a significant human impact on climate and the environment
crowdsource - To enlist the services of a large number of people outside the company, for little or no pay, to accomplish a task.
Thought for The Day:
"The only way human beings can win a war is to prevent it. -George Marshall, US Army Chief, Secretary of State, Secretary of Defense, Nobel laureate (1880-1959) "